April 20, 1998, is a day my family will never forget nor ever get over. It was the day our 20-year-old son, Evan, lost his 26-day battle with meningococcal meningitis. On March 26, 1998, the day Evan was diagnosed, we knew nothing about meningococcal disease, other than that it was something that happened to other people.

That March 26 was a dreary, still wintry day. When we returned home after Evan’s funeral, weeks later in April, everything looked different. The trees and flowers had bloomed – brilliant pinks and yellows. How could the world look so pretty when my heart was so devastated? Those images have stuck with me for 20 years.

Losing our son irrevocably changed our lives. Now, every day is cast in his shadow. One of my brightest sources of light has been keeping Evan’s memory alive by encouraging families and young people to learn about and protect themselves against meningococcal meningitis.

When Evan got sick, we drove three hours to his university, not knowing if he would be alive when we got there. Those were the days before we had cell phones. We stopped midway to check on him. The hospital told us it was very critical. When we first saw Evan in an oxygen tent, Evan told my husband it took every ounce of energy he had to roll over.

Each of those 26 days when Evan was in the hospital came with its own nightmare, but there are a few that stand out more than others. My younger son, Ryan, asked me if there was life after death – this was after we had been told that Evan had a 1% chance of survival. I was trying to absorb what the doctors are saying, while at the same time choosing words to comfort my younger son.

Then there was the night that Evan came out of sedation, unexpectedly, and saw his arms and legs black and charred from gangrene. No one thought he had the strength to lift himself up. Evan was intubated, so he couldn’t talk to us, but we could see the terror in his eyes. He went into a panic attack, with his fever spiking and all numbers out of whack. A wonderful neurologist came in and talked to Evan, told him he had almost died but would be okay. After that, the sedation was increased so Evan would not wake up unexpectedly.

Then the day of the amputations – the nurse coming into the waiting room four times, after each limb was amputated, and finally the neurologist telling us Evan was brain dead.

During this time, we learned that a vaccine was available that could have saved his life – if only we had we known about it, if only there had there been routine recommendations handed down from the CDC to physicians to families and teenagers. But in 1998, there were no such recommendations. The only young adults getting vaccinated were military recruits who lived in barracks; teenagers like Evan, living in college dorms (like barracks in many ways), remained unprotected. We were stunned and heartbroken that we’d never been told about the vaccine.

At that point my family decided that if we didn’t know about the vaccine, there were so many other families who did not know as well. We made it our mission to educate others about meningococcal disease and its prevention, and thus the National Meningitis Association (NMA) was born. We have come so far, but there is still much to be done.

These days, the quadrivalent meningococcal vaccine (MenACWY) is strongly recommended by the CDC for age 11-12 and again at 16. Many schools will not allow students to come to class unless they provide proof they were vaccinated. Even more recently, the MenB vaccine, which protects against a fifth strain of bacteria that has caused most college cases and all college outbreaks in recent years, has become available. The CDC doesn’t include MenB in its highest level of recommendation but urges young people and their parents to talk to a healthcare professional about it. (The NMA advocates for a stronger recommendation on MenB and continues to raise awareness of the vaccine.)

Despite relatively greater awareness and availability of meningococcal vaccines, many people still don’t know anything about meningococcal meningitis. If they do, it’s likely they’re like I was – blissfully oblivious, only assuming it’s a disease that happens to other people. Many of those who need the meningococcal vaccines are adolescents and young adults headed to college. They may feel invincible. Although this disease is rare, it is deadly, and if you haven’t been vaccinated it does not discriminate.

As I approach this 20-year anniversary, I am still devastated and always will be. You can’t lose a child and feel otherwise. I hope the NMA’s efforts have saved lives, so that Evan didn’t die in vain.

Evan once said to me when he was younger, that he wished he were a tree, because trees don’t die. Evan – you weren’t a tree, you were a beautiful, terribly missed son and brother. You will always be alive in our hearts.

Earlier today, the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP) voted for permissive use of serogroup B meningococcal vaccine for older teens and young adults (full language below).

A serogroup B meningococcal (MenB) vaccine series may be administered to adolescents and young adults 16 through 23 years of age to provide short term protection against most strains of serogroup B meningococcal disease. The preferred age for B vaccination is 16 through 18 years of age.

What Does This Mean?
Until now, the meningococcal vaccine recommended for routine vaccination only protected against four of five major strains of the disease (A, C, W and Y). Today’s recommendation is critical because, if accepted by CDC, it allows those 16 to 18 to decide, in collaboration with their parents and healthcare professionals, if they wish to be immunized against the fifth serogroup (B), which is currently the most common cause of disease in this age range. It will also ensure the meningitis B vaccines are covered by public and private insurance and medical practices will be more likely to stock and administer them.

What Happens Now?
It is important to know that this recommendation is for a new and different vaccination than the routinely recommended one your teen may already have received:

If your child has not received any meningococcal vaccines, he or she should get the recommended vaccine to protect against A, C, W and Y at age 11-12 with a booster at 16. When your child goes to get the booster, ask about the B vaccine.

If your teen received at least one A, C, W and Y meningococcal vaccine, you should make sure he or she goes back for the booster at age 16 and ask about the B vaccine for ages 16 to 23.

If your teen is up-to-date on meningococcal vaccines (including the booster), call your healthcare provider and ask about the B vaccine.

(Note, depending on which vaccine your provider uses, the serogroup B vaccination may be a two or three dose series.)

Please help spread the word about the need for vaccination against all serogroups of meningitis. Educating parents, teens and young adults, healthcare providers and college administrators about available vaccination options is extremely important.

Why Did We Need a Recommendation to #BVaccinated?
Though rare, meningococcal disease affects persons of all ages in the U.S. and is potentially deadly. Serogroup B accounts for one-third of U.S. cases, and is the most common cause of disease in adolescents. From 2013 to 2015 alone, four college campuses experienced outbreaks of serogroup B meningococcal disease. There were also many isolated cases.

However, numbers can’t tell the whole story and we’re grateful for the many advocates who shared their personal stories to help put a face to this disease. Here are some samples of what NMA’s M.O.M. and T.E.A.M. members said or submitted to the ACIP today:

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In addition, about 1,240 people representing all 50 states signed NMA’s open letter to ACIP supporting broad serogroup B vaccination recommendations. We were overwhelmed by the responses from healthcare professionals, college health professionals, parents, college students, individuals touched by this disease and others who support prevention. We received more than 500 comments, which you can read here.

This recommendation is an important step forward; let’s use it to make sure all teens are A, C, W, Y and #BVaccinated.